A qualitative examination of adolescent and parent perspectives on early identification and early response to eating disorders

Ciao, Anna C.; Lebow, Jocelyn; VandenLangenberg, Erin; Ohls, Olivia C.; Berg, Kelly C.

doi:10.1080/10640266.2020.1805960

Cited by 17 publications

(16 citation statements)

References 19 publications

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“…Like other parent samples (Ciao et al, 2020), weight loss and food restriction were the most commonly detected first signs of the child's illness reported in the Parent Survey, followed by changes in mood and personality (see Table 1). Most parents (81.3%) were the first to detect the child's symptoms while 16.7% of parents learned of the symptoms from another source (e.g., health provider, school).…”

Section: Ed Symptom Detectionmentioning

confidence: 83%

“…However, only 16.7% of parent respondents in the Parent Survey were informed of the symptoms by an external source, highlighting that parents are very frequently the first to detect ED symptoms in their child. It is of interest to note that among adolescents who have recovered, their most commonly endorsed recommendation for other families is to intervene earlier (Ciao et al, 2020). These collective findings along with evidence that longer duration of an untreated ED predicts a more chronic illness (Andrés-Pepiñá et al, 2020) show a clear gap in the literature for strategies for supporting parents to detect ED symptoms and take action quickly.…”

Section: Increased Focus On Supporting Initial Symptom Detectionmentioning

confidence: 99%

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Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Wilksch

2023

Intl J Eating Disorders

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Objective The majority of eating disorder (ED) carer research has been conducted with parents of adult patients, using qualitative methodologies, focusing on carer burden and distress during treatment. This article aimed to use results from a large, national, quantitative survey of parents of child or adolescent patients as a springboard for encouraging a more comprehensive investigation of parent experiences. Methods The online survey assessed treatment experiences and parent distress (DASS‐21) but also less commonly investigated topics including symptom detection, experiences with primary care providers, and impacts on parent physical and psychological health, romantic relationship, finances, and employment. Results Key findings included parents (N = 439; 91.6% female): were the first person to notice the ED symptoms in 81.8% of cases; had only a 14.7% chance of a helpful experience with both the first general practitioner and first therapist they saw; needed to see M = 3.55 therapists before finding one that could help; reported worse than normal psychological health (96.0%), physical health (70.5%), and romantic relationship (92.7%); required M = 70.06 days leave from work to care for their child (per household); and 91.8% accessed treatment in the private sector with median out‐of‐pocket expenses of AUD 10,0001–AUD 20,000. Discussion Recommendations to address research and practice gaps include: increased focus on supporting initial symptom detection; improving primary care and treatment experiences; and, increasing the number of ED treatment providers. Urgently needed are solutions to the overwhelming demand for services and clearly, more support for parents. Such strategies are vital for reducing the overall burden of EDs. Public Significance Most eating disorder (ED) caregiver research has focused on experiences of supporting adult patients during treatment. This article used a large national survey to explore parent experiences of their child or adolescent's ED in less commonly investigated areas, such as detection, primary care, impact on parent physical and psychological health, romantic relationship, employment and finances. Findings suggested mixed experiences with health care providers and a very significant toll of the illness on the domains measured. Recommendations were provided for how these important areas can be addressed.

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Section: Ed Symptom Detectionmentioning

confidence: 83%

Section: Increased Focus On Supporting Initial Symptom Detectionmentioning

confidence: 99%

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Wilksch

2023

Intl J Eating Disorders

View full text Add to dashboard Cite

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“…Cachelin & Striegel-Moore, 2006;Cachelin et al, 2001;Cavazos-Rehg et al, 2020;Chowbey et al, 2012;Ciao et al, 2020;Coelho et al, 2021;Couturier et al, 2013;Dayal et al, 2015;Dearden & Mulgrew, 2013;Del Valle et al, 2017;Elran-Barak et al, 2018;Escobar-Koch et al, 2010;Evans et al, 2011;Fitzsimmons-Craft, Balantekin, et al, 2020;Fitzsimmons-Craft, Eichen, et al, 2020;Fitzsimmons-Craft, Krauss, et al, 2020;Forrest et al, 2017;Goodwin & Fitzgibbon, 2002;Gorse et al, 2013;Grammer et al, 2022;Griffiths et al, 2015;Griffiths et al, 2018;Grillot & Keel, 2018;Gulliksen et al, 2015;Hamilton et al, 2022;Hartman-Munick et al, 2021;Hepworth & Paxton, 2007;Herman et al, 2014;Javier & Belgrave, 2019;Kanakam, 2021;Kästner et al, 2021;Lazare et al, 2021;Leavey et al, 2011;Lebow et al, 2021;Linardon, Shatte, et al, 2020;Linardon, Rosato, et al, 2020;Linardon et al, 2021;Lipson et al, 2017;…”

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Barriers and facilitators affecting treatment uptake behaviours for patients with eating disorders: A systematic review synthesising patient, caregiver and clinician perspectives

Daugelat

Pruccoli

Schag

et al. 2023

Euro Eating Disorders Rev

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ObjectiveA significant treatment gap exists between persons affected by eating disorders (ED), and those engaging with treatment services. This systematic review aims to provide a thorough understanding of the barriers and facilitators affecting eating disorder treatment engagement, including a synthesis of the perspectives of patients, caregivers and healthcare professionals.MethodThis systematic review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta‐Analyses guidelines. Studies were retrieved from three databases (PubMed, PsycInfo, Web of Science) and were screened and assessed independently by two raters. A thematic analysis was completed to determine the key barriers and facilitators reported by the included studies.ResultsA total of 73 studies were included. From these studies, 12 barriers and 13 facilitators were identified. Patients reported stigma, shame and guilt as the most prominent barrier affecting their engagement with treatment services. Meanwhile, caregivers and healthcare professionals reported a lack of eating disorder knowledge of clinicians as the most important barrier. Positive social support was cited as the most prominent facilitator to promote help‐seeking.DiscussionPatients, caregivers and healthcare professionals experience a variety of barriers and facilitators to treatment uptake for ED. Interventions addressing barriers and facilitators could increase treatment engagement, including anti‐stigma campaigns and positive peer‐support interventions.

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“…Future research to elucidate parents’ perceptions of a sudden onset of symptoms in the context of an eating disorder is warranted. Parents have previously reported slow recognition of eating disorder symptoms [ 28 ], which can impact parental interpretations about the nature of onset of food refusal or other symptoms. Obtaining both youth and parental self-report, as well as assessing parent report during or post-treatment, is also warranted to determine the impact on the proportion of participants who endorse sudden onset of symptoms.…”

Section: Discussionmentioning

confidence: 99%

Prevalence of pediatric acute-onset neuropsychiatric syndrome (PANS) in children and adolescents with eating disorders

et al. 2022

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Background Pediatric obsessive–compulsive disorder (OCD) and eating disorder symptoms frequently overlap, clouding diagnostic certainty and hypothesized etiologic factors. Pediatric acute-onset neuropsychiatric syndrome (PANS) is defined by abrupt emergence of core obsessive–compulsive behaviours and/or food restriction with concurrent, ancillary cognitive and behavioral symptoms. Inflammatory and immune processes have putative roles in both PANS and a related described condition with cardinal obsessive–compulsive or tic symptoms, known as pediatric autoimmune neuropsychiatric disorders associated with streptococcal infection (PANDAS). While prevalence of PANS and PANDAS has been examined in tic, movement disorder and OCD populations, this has not yet been systematically examined in a pediatric eating disorder sample. Objectives To identify the lifetime prevalence of those meeting PANS and/or PANDAS criteria within a pediatric eating disorder cohort. Methods Convenience sampling method was utilized to select consecutive youth (ages 8–18-years) presenting to an interdisciplinary pediatric eating disorder subspecialty program with a confirmed eating disorder and completed parent-report PANS/PANDAS questionnaire (n = 100). A parent-reported measure was used to establish lifetime prevalence rates for PANS and PANDAS. Descriptive and exploratory comparative analyses were conducted between PANS and non-PANS groups. Continuous measures were analyzed using two-tailed independent sample t-tests and categorical measures were analyzed using two-tailed Fisher’s exact tests. Results Among participants, 52% (n = 52) met PANS criteria and 0% (n = 0) met PANDAS diagnostic criteria. Core, abrupt-onset PANS symptoms included both food restriction and obsessive–compulsive symptoms in 63.5% (n = 33), food restriction only in 25% (n = 13), and obsessive–compulsive symptoms only in 11.5% (n = 6) of participants. In comparison to those who did not meet PANS criteria, those in the PANS subgroup were less likely to be male and more commonly prescribed a selective serotonin reuptake inhibitor medication. Significant group differences did not emerge for onset age, body mass index, eating disorder type or comorbid psychiatric/medical/autoimmune illness. Conclusion Lifetime prevalence of symptoms in keeping with PANS diagnostic criteria within a pediatric eating disorder cohort was notably higher than that previously reported in OCD or tic disorder cohorts. The overlap between starvation effects and ancillary PANS symptoms may challenge the practical utility of this putative syndrome within the eating disorder population.

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A qualitative examination of adolescent and parent perspectives on early identification and early response to eating disorders

Cited by 17 publications

References 19 publications

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder

Barriers and facilitators affecting treatment uptake behaviours for patients with eating disorders: A systematic review synthesising patient, caregiver and clinician perspectives

Prevalence of pediatric acute-onset neuropsychiatric syndrome (PANS) in children and adolescents with eating disorders

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